Hi Mrs D,

I have not posted in a long time. Some things have gotten better, but some things have not, and may have gotten worse.

I am about 2.5 months into taking vitamin B12. I stopped injections many weeks ago, and now use your favorite brand, Puritan's Pride, methylb12 5000 mcg once a day. I do let it dissolve under my tongue, but I do it on an empty stomach, and take a good amount of water to flush any residual b12 down that may be stuck in my mouth. Is it still early to see improvements? I have seen some here and there, but I notice some other things still going on, mainly related to my muscles.

Over the last few weeks or so, I have been having an increase in muscle twitches all over my body, sometimes even in my tongue it will twitch. They don't hurt, but are very annoying and concerning me. Also, there have been muscle atrophy, especially in my biceps and tricepts area, but other places too. I can tell my feet are a little smaller. Also, my forearms and hands are just skin, the muscle, and bones. I have no body fat anywhere. There has been an increase in weakness in my arms I notice.

I went to another neurologist as I did not like the first one I saw on May 8 (the one who wanted me to take amytryptaline and rolled his eyes at my complaining of my symptoms in his office). The new one I saw was very nice and kind. He performed a strength test and sensory test. I gave him a long list of my symptoms and he said the list is too long for it to be any one thing. He said he does not think I have a neurological disease, and that I do not have MS and that I do not have ALS. He said he'd tell his own brother this. He said that these issues will get better that it's a pendulum swinging back and that I didn't develop these issues over night. It made me feel good for a couple weeks, till I started feeling my arm muscles get weaker again (they were not as weak when I was in his office that day).

My question: could this be related to B12 still? I know that muscles can waste and feel weak, and burn after exertion if you're deficient. But it just seems this is getting worse even though my levels are now high and I'm on treatment. I've read up on adenosylcobalamin (dibencozide) and how it helps promote muscle growth and process protein into muscle, and that if you're deficient in B12 sometimes you need both methyl and adenosyl to repair the damage, that one alone may not be sufficient. I bought some (Country Life 3000mcg) and took one yesterday. I felt it, as I was hot all day, felt a different kind of energy than I felt since my startup reactions on methyl.

What do you think? It's hard to not think this is ALS. I have also had moments of difficulty swallowing and breathing. The doc said he thinks I'm just anxious, stressed out, these are causing these symptoms, and that the B12 deficiency matter is a pendulum swinging back to normal. Why, then, would these muscle issues be getting worse? He didn't order EMG, NCV, or MRIs and I took that as a sign that I'm OK, but I really don't know. Could this still be B12? I really hope it is.